lee lee a question for you

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DREAMGIRL
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   Posted 3/5/2006 8:29 AM (GMT -7)   
cool  hi lee lee, i was reading another post and you mentioned this long laundry list of supplements you are taing, why so many?  and i was especially curious why you chose to stop the co-q 10 abd the glucosimine/chondroiton? i take b-complex, acidopolis, co-q 10, fish oil,and a b12 drop. was considering adding the gluc/chondr to others, were they of no help, and how would you be able to know what was doing what to you system? thanks

erin.K
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Date Joined Mar 2005
Total Posts : 3148
   Posted 3/7/2006 2:32 PM (GMT -7)   

hey DreamGirl,

are the supplements you take benefiting you?

perhaps LeeLee missed this post.

I know for me...gosh, i stopped taking a chewable vitamin because IT WAS ANOTHER PILL I HAD TO TAKE!....but i'm back now.  i figure....i'll do anything in my ability to get better or at least get in a remission.

i take for supplements Cor-Omega fish oil packets (they taste like oranges) and a few Flintstones chewables and Viactive & acidophilis.  i eat a lot of garlic; olive oil; greens; berries...so i hope something is helping this along the way.

do you have RA?

take care,

erin


Active, Severe RA. Crohns Disease. Chiari Malformation & Right Brain venous anomoly. AS. Emphysema. Rheumatic Lung. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
Meds: Humira 40mg every 4 days; pred; Pentasa; Imuran; dilaudid; diazepam; Avinza 30mg; MiraLax & too many others.


DREAMGIRL
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Date Joined Jan 2006
Total Posts : 600
   Posted 3/7/2006 6:26 PM (GMT -7)   
:-)  hi erin, i think the supplements are helping, who knows, how old are you? depending on your age some supplements really aren't needed, i laughed when you said you took flintsones. i do know that the fish oil has raised my good cholesteral, i also eat raw almonds daily. i have not found anything that is helping my bach. i am going to go eat a pieace of gingerroot, just cause i like the taste and if that helps with the inflammation i will post here.  erin, i do not know what kind of arthristis i have, this is all pretty new to me.

DREAMGIRL
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Date Joined Jan 2006
Total Posts : 600
   Posted 3/7/2006 6:29 PM (GMT -7)   
:-)  erin, i noticed you are on diazapam, how long has that been on your list? i take i mg of ativan daily and want to get off but am afraid of the withdrawal syntoms of that.  does the diazapm still work for you? how much do you take. i built up a tolerance pretty quick on my ativan.

erin.K
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Date Joined Mar 2005
Total Posts : 3148
   Posted 3/7/2006 9:28 PM (GMT -7)   
Hey DreamGirl,
You are correct.  The Ativan one should not stop "cold turkey" because it can cause withdrawal.
So you are currently on 1mg Ativan daily?  To properly get off that med (as long as the doctor knows, because Ativan is not all that bad, it does help with angina & anxiety & blood pressure)....if you are still taking 1mg, start by breaking the scored tablet into halves, one half in the am and one half in the pm or sometime later that day.  the next week, take just one half of the Ativan every day and say do this for 1 to 2 weeks and see how your body adjusts.  from there if you're doing OK, you can take it just when needed...or every other day.  Ativan is Rx's as a when needed med many times.
That is what I would recommend to a patient, but then again I do not know you're whole health issues and history....so your doc could suggest the best route, and I would ask him first.
 
I take diazepam 5mg to break back spasms I get from AS.  It is Rx'd as "to take twice a day when needed"...so when I need it, I take it.  Like today, the spasms were bad, one pill doesn't stop them anymore, so I do end up having to take 2. But luckily they still do work, it's been about 4 years I have been prescribed them.  Also I have them in case of a seizure.
:-)  Hah! I have so many medications I have to swallow that the thought of swallowing a vitamin makes me gag!  skull So i like Flinstones. tongue LOL.  The fish oil I take in hopes that it helps in some way for the RA and Crohns (I hope so, I'll do anything).  And the Viactive I take because of the steroids. They make your bones brittle & GI doc wants me to take a RX calcium med...so I figured I'de start with this. Yeah, I'm 25 but it's been a rough 25.  My body physically isn't great...but still holdin' onto my looks! LOL. tongue
You take care & talk to you soon.  Erin
Active, Severe RA. Crohns Disease. Chiari Malformation & Right Brain venous anomoly. AS. Emphysema. Rheumatic Lung. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
Meds: Humira 40mg every 4 days; pred; Pentasa; Imuran; dilaudid; diazepam; Avinza 30mg; MiraLax & too many others.


LeeLee123
Regular Member


Date Joined Jan 2006
Total Posts : 49
   Posted 3/9/2006 10:55 PM (GMT -7)   
Hi DreamGirl :) & Erin :). Yes, I missed the post. I am taking lots of supplements just trying to do anything to help. I was taking Glucosomine with Chondrotin and MSN. I quit these because I read a study that showed they didn't really help. I am not saying that they do not for some people. I couldn't tell that they helped me after taking them for like 9 months. I was taking so much that I chose to drop these. I really think the CoQ10 is good for lots and I should be taking it. I think you are taking some good supplements. It is hard to take everything that may help you. In fact, I would guess that is impossible. I can't know for sure what helps and what doesn't help because sometimes the RA is just in a bad flare. I try to read and just take what I feel may help. I am just shooting in the dark actually. :)) I have to say that I just don't know. I do believe that there is help for our problems in good nutrition, so I try to supplement the best I can. :)

DREAMGIRL
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Date Joined Jan 2006
Total Posts : 600
   Posted 3/12/2006 11:27 AM (GMT -7)   
:-)  hi ladies, gee erin, you are so young, darn it makes an old bag like me(58) feel silly for complaining at all. i cannot beleive you have been on diazipam for 4 years and that small amount still works. i do have problems with anxiety , doing a little better through breathing techniques and meditation, but when i do get off them i will jump on an antidepressant if i have to  to control the anxiety. glad you are still looking good ha ha, remember  it is much better to look good than to feel good, haha. that use to be a line on saturday night live, i do not think as time wears on,we still feel that way. although, looking good still matters at 58! well, hi there  leelee, i do not get over to this site often but is nice to finally hear from you.  i think it sounds like we are all doing anything and everthing to help ourselves.  the one thing i swear by is the acidophlis, it is great for protecting my intestines.  erin is pretty young so the b vitamins my not be needed by her, but i take a good supplemnt of those and feel that has been a great addition.with my heart issues, i take the coQ 10  just cannot see a reason not to.  but someone like erin desn't need to. but i will say they can really help with you energy, just no downside to them, that is why i wondered why you stopped them leelee.

erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 3/12/2006 4:21 PM (GMT -7)   

hey dreamgirl,

yeah, i say that to myself a lot:"It does not matter how you feel....it matters how you look...and dahling, YOU LOOK FABULOUS!." lol

oh, i used to also take SAM-E.  i think it was ok for RA.  low on the $$$$ nowadays, so i can't afford it anymore.

age is so insignificant with RA & autoimmune disease, i see some 80 year old women getting around better than i do.

it's been real rough, especially lately.

take care.


Active, Severe RA. Crohns Disease. Chiari Malformation & Right Brain venous anomoly. AS. Emphysema. Rheumatic Lung. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
Meds: Humira 40mg every 4 days; pred; Pentasa; Imuran; dilaudid; diazepam; Avinza 30mg; MiraLax & too many others.


DREAMGIRL
Veteran Member


Date Joined Jan 2006
Total Posts : 600
   Posted 3/13/2006 6:39 PM (GMT -7)   
:-)  That is so funny about the 80 year old, isaw one today out walking the hood and i mean she was moving slow  but i hope i am still around to move at all at that age.   Erin you mentioned that ativan was good for angina, is that becasue of anxiety? i think i woke up with some this morning  but i swaer it is hard to tell if it is my chest or my stomach. i took some DGL ( that is an enzyme for the stomach) and i felt a little releif so i guess it was my stomach. later

erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 3/14/2006 11:46 AM (GMT -7)   
well, the Ativan will relax the muscles...thus the heart muscles too, reducing pressure and in the end freeing up the blood supply so that it gets to the heart arteries and vessels and relieving/helping stabile angina.
Active, Severe RA. Crohns Disease. Chiari Malformation & Right Brain venous anomoly. AS. Emphysema. Rheumatic Lung. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
Meds: Humira 40mg every 4 days; pred; Pentasa; Imuran; dilaudid; diazepam; Avinza 30mg; MiraLax & too many others.


Ducky
Veteran Member


Date Joined Mar 2005
Total Posts : 3199
   Posted 3/14/2006 1:36 PM (GMT -7)   
Erin, you are my hero... the wealth of knowledge you have amazes me... I'm so glad you're here... Duck
Diagnosed January 2005 - Psoriatic Arthritis/Spondylitis
-Currently taking 50mg shot weekly of Enbrel
Diagnosed May 1998 - Graves Disease
-Complete Thyroidectomy September 1998 - While 11 weeks pregnant
Other Complications - GERD/Scoliosis/Hiatal Hernia/Graves Disease of the Eyes
Current Meds -  Enbrel/Prevacid/Synthroid
Past Meds - Inderal/PTU/Prednisone/Voltaren/Feldene/Mobic/Cortisone and Steroid Shots


DREAMGIRL
Veteran Member


Date Joined Jan 2006
Total Posts : 600
   Posted 3/14/2006 5:32 PM (GMT -7)   
:-)  ditto to that, erin how did you get so smart at such a young age!!!!! i will keep that in mind about the ativan, i have been afraid to stay on it, it isn't really helping with my anxiety or sleep anymore, but i guess it is helping in the way you suggested, thanks. for everyting. my wisdom is not useful here  Ha Ha

erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 3/15/2006 10:50 AM (GMT -7)   

i can understand that it won't in the end help with sleep...you're right with that one.  what it DOES  is relaxes you before sleep.  redface Ativan is used for sleep problems related to "not being able to get to sleep because i cannot shut my mind off!"....but, it will NOT keep most people asleep in long use like say Ambien or Lunesta will.

so basically it's stress induced insomnia that docs like to use Ativan.  if you're looking to fall asleep & stay asleep...the Ambien and Lunesta meds are more appropriate choices.

how did i get my wealth of knowledge? confused hah!  :-) that was nice, thanx! umh...in highschool i took advanced honors anatomy & physiology & all biology classes as my "fun electives" and worked with the football trainer and PT for 4 years. i wanted to be a doctor!  in college i worked in medical/surgical offices part time and majored in BIO and nursing.  also went to technical school for medical assisting and ultrasound. and working in  nursing in the hospital setting....you're in constant "ON" switch especially in school, so we were always researching and TONS of work and study.  in that time i also studied bacteriology & rheumatics on my own.

living with RA, having had Lymes for 10 years, and basically being kinda sick throughout school and as a young adult made me more interested in the human body and the conditions i was going through.  i think i would have never sparked an interest in medicine if my pediatrician never knocked off these strep throat pustules on my tonsils when i was eight and showed them to me!!!!!!!! i thought it was so cool.  tongue so if i never had been ill....i suppose i wouldn't be in the field i am now.

I JUST WANT TO BE WELL ENOUGH TO WORK ALREADY!!!!!!!!!!! mad

I'm like a cannon ready to shoot! I've all the determination in the world...but pretty much housebound mostly all days of the week. Am really tired of being in pain/fatigue/toilet bowl/mobility issues.... and not being able to do what i want.


Active, Severe RA. Crohns Disease. Chiari Malformation & Right Brain venous anomoly. AS. Emphysema. Rheumatic Lung. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
Meds: Humira 40mg every 4 days; pred; Pentasa; Imuran; dilaudid; diazepam; Avinza 30mg; MiraLax & too many others.


DREAMGIRL
Veteran Member


Date Joined Jan 2006
Total Posts : 600
   Posted 3/15/2006 5:35 PM (GMT -7)   
mad   

Geez erin, i guess anyone would be tired of being housebound. How long has that been the case? Do you have expectations of that changing in the near future?oops iam using caps again, erin, it has to be extemely difficult for you, frankly, you are a champ in my eyes, i was whining after a few months of fatique, went off all my meds so i could(live) again. However, i have never been in your situation with so much to deal with. Thanks for the ativan info. I tried lunesta and ambien they did not work. Prozac is what got me started on better sleep and so far i am doing okay while off of it. I plan to stay on the ativan a little longer, in the long run what's another 2 or 3 months.

 

*** I didn't take anything out, just changed the CAPS to regular :-) Duck***

Post Edited By Moderator (Ducky) : 3/15/2006 6:23:27 PM (GMT-7)


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 3/16/2006 2:32 PM (GMT -7)   
thanks Dreamgirl,
how are you doing?  wow, that's nice that Prozac helped w/ the sleep issue. sleep is so vital especially when a person has a disease.  how has the sleep issue been lately? 
eyes  there are so many times where i say "i don't know how i do it"...and i get the same from my friends & my (few) family. i think what has kept me sane & with it through all of this is my shear determination to go back to nursing and have a nice life with my honey...that's all i want.  and when (notice i don't say "IF") i am able to get back to work i want to be able to direct & guide the patients i care for to the BEST ability there isand i know what it's like...i can relate to pretty much all age groups. i definitely know what it like to say be an 80 y/o who can't feed herself/shower/get around; i know the life of a person with RA; i know the life of a person with an infectious disease, Crohns, a life that consists of all day medication taking, shots,....etc.  having travelled the road & still riding it...i think it'll be great when i can walk and stand and work. and i am looking forward to it so much.
 
ummmmh...i've been dealing with MAJOR (by that i mean life-interfering illness issues) since 2001. so that's 5 years of fast progressive joint disease.  before that i was still "normal and able bodied. 
i had to leave work (one day per week i had been for a year) in May 2005. basically i forced myself and pushed myself and fought up until i collapsed. so since May, i've been facing mobility problems. dealing w/ the bad RA and acute bouts of flares plus obstructions & bouts of all day diarrhea most days of the week...doesn't allow me to function too greatly. i was at a time in the summer where i could walk a few days a week...but i'de say the past 3 months the most i can do in a day is shower, read, type a little, study and maybe that's it, and that's a good day. 
i really wish i could make this go away for everyone.  no matter what the degree of it may be, RA & related AI diseases should be gone from this planet!
Active, Severe RA. Crohns Disease. Chiari Malformation & Right Brain venous anomoly. AS. Emphysema. Rheumatic Lung. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
Meds: Humira 40mg every 4 days; pred; Pentasa; Imuran; dilaudid; diazepam; Avinza 30mg; MiraLax & too many others.


DREAMGIRL
Veteran Member


Date Joined Jan 2006
Total Posts : 600
   Posted 3/16/2006 5:43 PM (GMT -7)   
:-)  hi here too erin. well i cannot imagine being locked in for that period of time.  right now as tired as i am i hope to keep myself in for a day. it's always something. Sounds like you would be a great asset out in the nursing field, wow you would bring alot to the plate, let's pray you get well enough for maybe a day or two and that God furnishes just the right place. bye for now    DUCKY   sorry for the caps, i forget to unset them.

Ducky
Veteran Member


Date Joined Mar 2005
Total Posts : 3199
   Posted 3/17/2006 5:05 PM (GMT -7)   
Hey Dreamgirl, no biggy about the caps :) I do it all he time!
Diagnosed January 2005 - Psoriatic Arthritis/Spondylitis
-Currently taking 50mg shot weekly of Enbrel
Diagnosed May 1998 - Graves Disease
-Complete Thyroidectomy September 1998 - While 11 weeks pregnant
Other Complications - GERD/Scoliosis/Hiatal Hernia/Graves Disease of the Eyes
Current Meds -  Enbrel/Prevacid/Synthroid
Past Meds - Inderal/PTU/Prednisone/Voltaren/Feldene/Mobic/Cortisone and Steroid Shots

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